UPSC uterine cancer and my mom. Her story.

Hybridspirits said:

your story

i am interested in what you have to share.  I determined to beat this and hope some day to see Grandchildren.  Let me know

thanks so much for taking the time to share

I'm so sorry. Big hugs. What a loss!

Thank you for posting. What treatment did your mother have?

Hi I am also 3c. It will be 2 years ago in May when I was diagnosed. What were your moms symptoms when it spread to her brain. Please share anything you'd like with the group.I am sure it will help us. Thanks, and I am so sorry about your mom. Tami

foxyfoxfox said:

The journey

Hi everyone

 

I have been reluctant to post too much here lately because I am still reeling from the loss of my mom. Its like there are two things happening here at once....the loss of my mother and (grandmother to my little boy), but also dealing with the trauma associated with how this illness manifested in her. I fear that relaying all the details of her story may serve to frighten or promote worry in some of you struggling with this cancer. As we all know everyone is different and her experience by no means reflects any one elses. But if there is anything to be learnt here from her journey, (and I hopt that there is), than perhaps it can help. It feels like a fine line I guess.

But here goes....

She was dianosed in May 2012 with UPSC, stage 3C. She was an otherwise strong and super active woman. The cancer diagnosis was a complete shock and they told her she had 3-5 years to live. None of that seemed reasonable or accurate because she was diagnosed with NO symptoms and felt totally fine. But there we were, faced with this crazy reality. Looking back I wish we had listened to the docs in all seriousness when they spoke of the prognosis because I feel as though I should have pushed her and us to take a trip or go and knock some things off the old bucket list. But we didnt. We had to knuckle down and give this cancer a run for its money. That meant immediate radical hysterectomy followed by 6 rounds of chemo and then external radiation to the abdomen, uterine area with some internal. The chemo blasted her and it was awful, the radiation too was not fun. But she endured and actually bounced back. By May 2013 she was doing okay and more like herself. She was going back to the gym and being active and babysitting my two year old. 

All was okay and I think we were in some sort of deep denial about the cancer and its aggessiveness,  as well as its high rate of recurrance. In and around July 2013, I noticed a change in her demeanor. She seemed way more easily agitated and she was complaining of extreme fatigue. I thought maybe things were catching up with her, that tiredness could be a delayed reaction to the nuttyness of chemo and radiation. Who knew? Who knows? In August she drove herself to the emergency department as she was having some slurred speach as well as some pain/weakness in her right arm. She thought she was having a stroke. The ER people rushed her in and after some tests it was confirmed that she had a tumor in her brain, some in her lungs as well as her spine.  Kapow. Just like that everything changed. And in retrospect it was the beginning of the end. That was 7 months ago now and she passed away just over two weeks ago. A tumor. In her brain. A big one. The spine and the lungs were nothing to tackle at that point because well. the brain trumps all. So the treatment began. She was given radiation to the tumor. It was a one time mega blast of radio surgery that was almost guaranteed to shrink that thing. The radiation went okay I guess, but what they fail to tell you is all the other medication (steroids) they will make you take to help reduce the swelling etc can wallop you big time.  That stuff nearly killed her, truly. Anyway, at that time we opted not to also have the whole brain radiation for fear of the associated dementia like possible symptoms. In retrospect we should have done it so it could help ward off any teeny tumors that were beginning to form. Some of her speach and arm symptoms kept coming and going and seemed to be linked to the steroids but after a routine MRI, it was apparent that another tumor was forming in her brain stem. This news came down just before this past xmas. Not good. Like really not good. Because of the location of the tumor whole brain radiation was the only option. She endured two solid weeks of daily radiation to her brain. Thats when I quit my job once and for all and helped her 100%. My god, what a time. What a struggle. What strength she had and what an intense hospital experience. The only good thing about that time is the fact that we got so close. Its such an intimate thing going through cancer with someone. 

Anyway. Between Christmas and early February things just steadily declined. She passed away Feb 19 2014 in hospital paliative care. I knew it was coming, but man oh man, I did not want to believe or accept it. Still dont. 

She fought. She tackled and she braved this raw deal with such grace and did all she could to protect me from it. In the end the cancer won and I had to tell my son that his biggest chearleader is no longer with us. So unfair. 

I hope that this story is helpful and can shed some insight into how things can go. I think in regards to her cancer she was rather unlucky because people do continue to live and thrive much longer with this disease I gather. As well, the above is just a summary of what happened. If anyone wants to know in more detail about her reaction to meds, the procedures and what to expect, please let me know. Id like to think that somehow her story can help others in making treatment decisions and prognosis realities etc. 

Much love and strenght and good health to you all.

 

xxooxo

 

 

 

 

 

 

I am so sorry for you and your family.  Your Mom's journey was a difficult and short one.  May you remember the good times with your Mom as time goes on.   I pray for peace and comfort for you and your family.  Take comfort in knowing your Mom is no longer suffering.

As you have said we are all different.  I too was diagnosed with UPSC stage 3-C in Jan 09 after having no symptoms either.  It was quite a shock to hear that.  I too had the chemo and radiation initially.   I had an 18 month break from chemo then needing 7 more treatments of chemo.  Then I had only a 7 month break before needing  6 more chemo treatments.  Currently I have had a 21 month break, but will need chemo again.   Luckily my recurrences have stayed in the lymph nodes.  

There have been other "sisters" that were diagnosed about the same time as me that have lost their battle.  But there are others that have survived longer than I have. We all have different journeys.  You are right that we do not know what the future holdS.  So everyone needs to enjoy today.  Do those things on your bucket list, you do not know what tomorrow will bring.  I think everyone needs HOPE.  

Your Mom was lucky to have such a caring and supportive daughter.  Again I am so sorry for the loss of your Mom.  In peace and caring.